Grieving for a child I haven’t lost

*Preface: I feel it is important to say that while I stand by every word of this blog I do not always feel this same intense grief at all times. If you can relate to this blog I want you to know two things: you are not alone, and it does get better. With love, Miriam *

As I sat on the bench in a public park the tears came easily. Watching little toddlers peddling trikes and mothers chatting to babies. Seeing pre-school children laughing and chatting as they wheeled around the water on their brightly coloured scooters.

It has been building for a while.

The night before last it was anger and hurt as a friend shared how her 14 month old was defiantly talking back when they were trying to get her to bed. I wanted to scream and say ‘but she understands! But she talks!’ Instead I mourned silently.

The world goes on while I grieve for a child I haven’t lost.

It is a very different pain to others. I know the pain of not having children. I know the pain of losing a yet-to-be-born baby. I know the pain of losing someone very close. I know that feeling of despair and anger and hopelessness. People understand when they know you have loved and lost.

But how do you explain you are grieving a child you have not lost?

I get to read to my son. I get to bathe him and dress him and kiss him. I hear him laugh when I tickle him and get to push him on the swings at the park. He goes to school. He will watch a video sometimes. And yet he is lost.

I have yet to hear his voice. I grieve for the conversations we will never have. I grieve the fact I will never hear him sing or shout or chat with friends like those little ones in the park. I grieve for the fact I will never hear him tell me a joke or talk to me about his day at school. I grieve for the loss of never hearing him whisper ‘I love you’. I can only dream about what his little voice may sound like, how it might have grown in depth and tone as he aged, what sort of accent he may have had or how he would pronounce names of people he knew. A part of him will never be. And I feel the loss and pain of that.

I grieve for all the milestones I have missed and may never have with him. As I watched a mum bend down to hold her son’s hand today to help him walk I thought about how much she takes for granted. Her little one was not much over a year old and yet he confidently held her hand to take some steps. By the time my child did anything like this he was tall enough that I had no need to bend and his hands were nothing like as tiny as her son’s. I have skipped the toilet training, the bike riding, the learning to read and write, the school plays, the attending clubs and the having friends. I have been robbed of things others take for granted and that should be part of normal childhood. There is a loss and a sadness for times that might have been but will never be.

There is sadness that I can not walk him to school or that he can not go to school with his twin sister. There is pain relying on others to tell me about his day when I should hear it from him. There is heartbreak watching the neighbours child of the same age jump on a trampoline and my son can not balance on one leg let alone jump. There is a lump in my throat when people ask what my child wants for Christmas and he still plays with baby toys at almost seven. We have never experienced the tooth fairy with him, he has no concept of Santa Claws and neither chooses his own clothes nor has the ability to dress himself. He has never said ‘mummy can I have’ or gone in a strop because he can not go out to play. He has no friends his own age and doesn’t get invited to parties.

He is here but to many he isn’t.

I have a son. He is my pride and joy. I am so proud of everything he does. But I still grieve for him, for the things he will never achieve and the experiences he will never have. And I grieve for myself as a parent when I see a world of parenting I can only ever dream about.

As I sat on a bench in a public park the tears came easily; tears of heartache and anger, tears of frustration and pain.

It is all part of the journey. Before I can move on I need to grieve for the loss. And grieving takes time.

So please forgive me and support me. Life goes on and I understand that. I have no bitterness at that.

But sometimes those tears are needed. Bear with me as I grieve for a child I haven’t lost.

115 thoughts on “Grieving for a child I haven’t lost

  1. This one hit me hard tears flowing freely I had a similar experience when my Son came home from hospital hit like a wave and was so unexpected and made me feel worse until I confided in others parents to find I was grieving. To others I should have been celebrating him coming finally coming home after first 6months battle.
    Your explanation is well written and I pray it gives a helping and healing hand to others as its the hardest thing to explain or understand without experiencing it.
    I pray each day get easier big hugs xxx

    Liked by 1 person

  2. Feel the same been like it this 4 5 yrs so upsetting thought I wud b better but not the pain just gets stronger good u. Shared this 2 no som 1 feels same xxx

    Liked by 1 person

  3. I totally understand. My son is 14 now, is quadriplegic, has no communication, can’t sit, hold his head up, has no real use of his limbs, can’t hold things in his hands, i also have a 3 yr old, who learns something new every single day, a new word, a new skill, i feel so much pride watching his accomplishments, thats tinged with such sadness that his older brother will never be able to do any of the things he can do so easily. The pain is always there, but you learn to appreciate the smallest of things your child can do too, like kick like mad when i’m dressing him, and laugh so much when i tell him off! because he does understand, and he has a wonderful sense of humour! And thrust his leg out, when people walk past, and laugh, as he trips them up! little things, that show he is taking part in our daily lives too! sending huge hugs! xxx

    Liked by 2 people

  4. Big hugs to you. What a tough, honest thing to write, and to read. My daughter is very able for a ‘disabled’ child, but there are many things she hasn’t done that others her age have, and she may never do. I feel sad about that too, and it’s hard not to think ‘what if’ and ‘it’s not fair’.

    Liked by 1 person

  5. You made me cry. Was talking to God about our three this morning. “Just love them as I love them. They are My children and I chose YOU to look after them because you are also special. I am the All Knowing Almighty One who will supply all your and their needs. Trust Me and I will supply all the love and strength you will require. Everything is under My control. I use the weak to do my work.” ❤U.

    Liked by 1 person

  6. Amen! I just dropped off my little boy at Kindergarten. All the children lined up with their new backpacks and lunch boxes and marched into their new classroom. But my little boy was detoured into another room. A little room, with other kids he’s known since he was a toddler. He’s high functioning enough to ask why, to want to go with the rest of them, but not enough to understand any explanation I can give him right now. Everyone was so excited and happy on the first day of school but my heart was breaking for my son.

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  7. Wonderfully honest…so many parents are in a wilderness state, they have no idea that they are actuall greieving for the child they didnt bring home. …Landed I Holland!…not Italy where they signed up to whenthey found out they were expecting. I was a Portage worker for 17 years..I have been priviladged to work with and help families like you…hope I have made a little bit of difference i theri lives. Bless you. Xxxx Thanks for your honesty xxx

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  8. Reblogged this on transatlantictransadvocates and commented:
    As I study ways to make this Blog be a mirror of how I feel deep inside about “nonnormative” persons, I feel my heart telling me that we are all normal, in our own ways. At the entrance of the retreat house where I was in formation as a Benedictine Oblate, there was a quote from the Monastic Rule admonishing all to “welcome the stranger as you would welcome Christ himself.” As an Oblate living in the Monastery Without Walls, this welcoming of the other, no matter how the stranger “musters up” to the norms culture conditions us with through social media. Every human being is a sacred, infinite being created by God with the gifts God has bestowed.

    The grief of all parents about the things that were dreamed for the future that will never be, like the grief around a child who changes gender, is a true loss. As such, the grief has to happen so that rebirth and strength can then blossom.

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  9. I fell in love with my daughter the second I saw her but this is exactly the truth. I grieve what she should have been. The day she was born I was driving home to check on my son and I broke down screeming why her. It’s not about the loss I feel but the loss gods angel has. The pain I feel is not for me but for what my ANGEL will not experience and feel. God blessed me with her. Family told me if anyone had the heart to raise her it was me that I was a good person. That is not true. I am now a good person because of her. I have never had a greater appreciation for life then I do now. Thank you for writing this. I sometimes forget how lucky I am. I wish people could stand in my shoes for a while the world would be such a better place. Daddy loves you Hailey

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  10. Sending you a big hug. Grieve away. It’s good for you. It’s not easy being strong all the time. I have an 11 year old daughter who has the maturity and the communication ability of a 4 year old at best. I grieve when I see kids her age especially family and friend’s children the same age. I wonder why she was left behind and of all the things that could have been. It’s definitely cyclical. I’ll grieve, be strong, be grateful that she isn’t as mouthy and isn’t giving me attitude like other kids her age, and then I grieve again. You expressed what alot of us have felt and you wrote it so beautifully. Thank you for sharing your gift with us.

    Liked by 1 person

  11. Grieving for a child I haven’t lost. These words sure are gonna linger in my head for a long time. In every word, I can sense the sadness you feel and the pain you go through trying to overcome the negative feelings. I admit, it is a lot to take. There is a overwhelming sadness clouds my heart and tears in my eyes when i think of the unfairness of life. From the deepest of my heart, I feel very sorry Miriam. And know that it takes a lot of will and courage to do what you are doing right now. I sincerely pray and hope that things will become better. I believe there is someone there to hug you tight and say that it’s gonna be alright. If not, count this friend in.

    Liked by 1 person

  12. My nephew has cerebral palsy and my brother & sister-in-law are such happy, positive people it’s too easy to forget the grief they face on a daily basis. My sister-in-law shared this. Thank you for your eloquent, simple reminder of how lucky I am, and how amazing my brother and his family, and all of you dealing with these issues 24/7/365, really are.

    Liked by 1 person

  13. I grieve daily for a son who has aspergers; and mental health issues – that were not diagnosed . I grieve for all the things he will not be able to accomplish . The pain never goes away ; we learn to live with pain .

    Liked by 1 person

  14. I grieved for a child i didnt lose for 5 yrs. Then i did lose him and you dont know true grieving untill your child isnt hear any more. Just like the mother take for granite that her child can easily walk. You take for granite that you still have your children. Hold them close and dont grieve yet. The time you have with them is far to precious. Enjoy the little things and forget about the big. Big isnt always better. Live and cherish your littles ones.

    Liked by 1 person

  15. Thank you for sharing this heartfelt sentiment. We just found out about our niece having IDIC15 and we have been grieving the loss of her life that we dreamed for her. This article is helping families. Know you are heard and we support you!

    Liked by 1 person

  16. Your child is yours, never grieve over what they cannot do, there will always be something. Instead celebrate what they can do, rejoice in their abilities and be amazed about what they can achieve. You shouldn’t compare any child.

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  17. This hit me hard. I lost my niece a little over a year ago. She wa 5 1/2. She had Mowatt Wilson Syndrome. She fought a hard battle in her short life. While many days my sister would mourne all the things you yourself describe. Things did get better a bit. She began to make those strides she and we all worked so hard for. Then just like that she was gone. I dont think it gets easier at any point. I look around everyday and things remind me of her. What she could do and what she couldnt do. I see children with special needs and their familys or caregivers and my heart breaks. These lifes we lead are hard hard for us because we know the difference, what gives me peace is to know that bella only knew the life she lived and she lived it well. She lived with more courage, strenth, heart and happiness than anyone ive ever met. It was what she knew. And i always tell people who tell me “shes in a better place not expierncing the pain and suffering” i think we had more pain and suffering than her. It was the life she lived since day one. It was her normal. Her expectation.

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    • At Pollymere, Miriam does delight in her children very much so – a more devoted and loving mother you wouldn’t meet. Its not very realisitic to imagine that Miriam would not want to be able to hear her sons voice and know how he is feeling or to want, for his own sake, experiences that other children can do readily. I think if you would have read the article more closely you would have heard her heart and would not have made the comments you did. She isn’t simple comparing her child to another.

      Liked by 1 person

      • Do you have any pets? Animals can be very therapeutic for children with disabilities and learning difficulties. I read a book about a boy that didn’t talk until he got a pet cat. I hope one day he achieves all the things you want him to and that you will find happiness xx

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      • Never once did I think this reflects someone who wasn’t grateful for their child, but I did think this is a person who loves their child so deeply that they wish the best for them to be able to do EVERYthing that any other child could do!

        Liked by 1 person

  18. My second born son is nonverbal and very disabled, and while I’m sorry for those that feel this way, I never have. I feel; grateful and blessed that I have my Frankie, just as he is. Without autism, and Angelman syndrome, he just wouldn’t be my boy. He would be someone else. Frankie has autism and AS, and it’s an idellable part of who he is. I love being Frankie’s mom. 🙂

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  19. I feel the negative responses to this are unwarranted. Please feel any way you want to feel, this is a forum for you to talk about how YOU are feeling, and if this is how you is feeling, along with other moms there is NO shame in that whatsoever.

    Liked by 1 person

  20. Gosh, this is so on point. I do feel like I lost my “child.” Despite my son being 12 years old, I remember my child “dying” and being replaced with the child I have. Have hope though. My son is the best thing that happened to me, strangely enough. I am a better human being as a result, and I feel more out of life than I expect others who take things for granted. How do I explain this to people? I describe it as being an intense roller coaster, with more significant ups and intense downs than a kiddie coaster. People seem to get that, but it does not nearly describe the amazing journey. I hope you find others who know your journey.

    Liked by 1 person

  21. I have a 24 year old son with autism. He can do alot but cannot read, write or manage much of his daily life. I have often watched with envy at other boys while they were growing up and seeing all the regular stuff I/he was missing. Then my good friend lost her 24 year old son, my son’s only friend growing up, to a drug overdose. He was a brilliant young man with the world ahead of him. Suddenly my personal grief abated and I was content with what I did not have. I am by no means trying to minimize any feelings here of others, just sharing my story and how it finally came to peace for me.

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  22. Tears flowing as reading.. I know this too but try not to show it…I want to hear my little boy say “mummy”, I want to see him to the same things as my friends children….sometimes I resent them sometimes I feel I’m luckier than them….either way I love my special little man…but yes it’s hard and the sympathy doesn’t help….xx thank you for making me not feel so alone…

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  23. Reblogged this on Minding Thomas and commented:
    Oh man this is heavy. I am thankful Thomas can say some words but I grieve a lot for all the experiences I envisioned sharing with Thomas that I know will not happen for us. It is exactly as said, you are grieving a child you never lost. Just because I grieve does not affect the love I have for my son…ever.

    Liked by 1 person

  24. I so feel for this mum as it echoes my sentiments as a mum to a disabled child – how can you grieve for that you haven’t lost – your child is here but for other mums their children are not. How can you grieve for a life lost when the person concerned is still alive but living an enormously different life from that which you expected. You are in limbo – torn between the life you wanted for them and the cruel hand fate has dealt.

    Liked by 1 person

  25. You put this beautifully.
    You say what I feel with a child very similar in age and diagnosis to yours.
    I crave your words because you say out loud what I feel.
    Ignore the negative posts.
    Let me be that invisible arm round your shoulders whilst you cry. For you are mine.

    Liked by 1 person

  26. Hugs! I hope one day your grief will ease. My daughter is 24 yo, nonverbal with Autism and Down syndrome. When she was younger, we were always trying to hit milestones that we never achieved. Even her special needs peers passed her by. Tears came easily then. It’s a chronic sorrow. But time eased my pain, now I accept her for what she can do and love her for who she is. Another thing that helps immensely is to get little respite breaks from her care where I can reconnect to myself, my husband and our other children. I usually miss her so much that I’m eager to see her again.

    Liked by 1 person

  27. Pingback: Fred Foundation » Blog Archive » Totally captures it – time is not a healer, nor does it make it easier for me there is no end to it….

  28. Pingback: Do they know what grief is? | kathleenbduncan

  29. So much love to you, Miriam.

    I am also the mother of a baby with rare and severe disorder, though due to my baby’s specific prenatal prognosis, which involved a lot of pain, we choose peace for her instead of life. In less veiled terms, I had an abortion. I am not saying it is the same thing to end my pregnancy as it is for you to raise your special boy; it is clearly different in many significant ways. Even so, you speak straight to my heart, because I love my forever baby girl and I have grieved from the very first moments I saw the holes in her brain. I know what it is to speak my honest truth to a world that doesn’t want to hear it, too a world that would rather blame me than open with love for me and my child. I know the importance of building connection in the face of taboo.

    I just want you to know how much I love you and respect you and admire you for the woman you are, and how glad I am that your son is in this world, and how sorry I am that I don’t have the power to give the gift of a miracle cure to him and my own baby girl. So much love to you, and my deepest gratitude to you for writing your beautiful truth and sharing it so generously.

    Liked by 1 person

    • You are exactly the face of what most abortions are. Bless you for having the courage to make such a heartbreaking decision. Too many people want to see abortion as only negative. It is a loss just as profound as losing a child any other way. Families who care for special needs children have their own lot in life: full of grief over what might have been and full of joys in the successes they never seem to take for granted. The strongest ones focus on the positive and share with the rest of us those happy moments. Thank you both for sharing your stories and allowing outsiders to see the beauty within.

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  30. Thankyou for writing about that, I cryed and could relate to many of the things you said, it had been building for me for a while and wondered whether anybody else felt that way haliluya you gave me a much needed release thanks and lots of love to you and your wonderful children xx Manda a mum with a daugher who has angelman syndrome.

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  31. My son was born without problems but was seriously ill as a toddler and has been left with a brain injury. It is so hard to transition from a child who is developing within the normal milestones to one who is 3 years below where he should be. I am do proud of everything he accomplishes but I grieve for the little boy he used to be. I cry with pride and joy at his achievements and with pain and hurt when he can’t deal with things. It is hard to explain to anyone the grief when you haven’t lost your child.

    Liked by 1 person

  32. Those that have had a Special Needs Child should completely understand what is being said here. My heart is with you. I too had a space at first where I grieved for the Child that we thought was going to be like all of us want our Children to be. It was a grief for the Daughter of our expectations. It was a short grief at the time I have come to find out. I know the love you have for your Child also. The Grief after the loss of our 32 year old Special Needs Daughter is so different to that grief that I experienced before. I would give anything just to hug her or even hear her Movies playing in her room or her Day Program bus drive up for us to wheel her in, or her voice when she would say the few words that she could. God bless you. Hug them everyday and let them know how very special they are. You will be so glad you did. I write this in love and care to all of you with a very special child like we had. Missing her almost 4 years now.

    Liked by 1 person

  33. You put in to words what so many of us feel . What so many other people will never understand. I take no real comfort in knowing I am not alone. I truly just wish none of us had to live this life. The hopes and dreams you have for your child shattered by a diagnosis. Yes, I am glad he is still here. I am proud of his achievements. Every goal he meets is hard won, but he does meet them. I am proud and fierce and his protector. His advocate. As his Mom I often cry inside.

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  34. I to dream of what her voice would sound like. I sometime have tried to imagine what it would be like to see her even walk…it makes me sad that I can’t imagine it! The roller coaster of our lives with children with special needs allows us to grieve for these losses, and we are allowed to speak it! It doesn’t mean that is all we feel, we feel joy for the things they can do…so people who like to point out that part…we know…we are greatful for that too, but we have earned our badge and are allowed to grieve! For these are our truths and we shouldn’t have to hide them so that others can feel comfortable, we shouldn’t have to live in a world with others who think the worst has happened to their child ….’a ear infection’! We should share our worries, fears, and heartbreaks…maybe then others can see and understand us and our children?

    Liked by 1 person

  35. My emotions came back after reading this. I’ve always been so sad with what’s happening with my son, but you gave me strength. Thank you!

    Mind if I repost this on my blog? Thanks!

    Liked by 1 person

  36. My daughter has been diagnosed with cerebral palsy as a result of birth injury. She is now 9 years old and the light of my life, the greatest teacher I will ever have.
    I still cry sometimes when I see all the things you do, or hear about my friends 2 year old who is running circles around my daughter developmentally. I mourn for the loss of a ‘normal’ childhood for my princess.
    Then I REALLY look at her…This little girl will NEVER know a broken heart from some idiot who wasn’t prepared to love her the way she wanted, she will NEVER know greed or jealousy, she will not be torn down by societies unrealistic expectations of how she should look or act. My daughter will always be herself, and thank God for that. The world is already full of fake individuals who double cross others without a second thought. I’ll never have to be ashamed of her for her actions or words, I don’t have to wonder if I raised a good child, I’ll always know the answer to that question:
    YES!
    It’s perfectly acceptable to grieve, I still do it from time to time. I pray though, that you remember that ‘normal’ isn’t all its cracked up to be.
    God bless you and your family!

    Liked by 1 person

  37. I’m late to the party, but your post had me in tears. You’ve described my feelings exactly. I love my son dearly, but all the simple things most people take for granted he will probably never do. He works so hard to learn skills typical children learn from their environment. I know he will never have a wife or children of his own and I grieve that loss for him, too. People (those with NT children) tell me it will get easier, but they don’t live this life–always worrying he’ll bolt into traffic, elope from our home (which he’s managed to accomplish on a number of occasions), or engage in other hazardous behaviors because he has no sense of fear. Aloha Nui Loa…

    Liked by 1 person

  38. You have broke my heart is have a grandson who I love with all my heart but for heat breaks for his mum thank you for your word I know just what you are saying x

    Liked by 1 person

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